Partnerships
In just a few short years, SHINE Syndrome Foundation has successfully partnered with various organizations dedicated to supporting rare disease research, awareness, and collaboration. These are a few amazing groups we’ve been able to partner with in our journey to finding answers for SHINE Syndrome patients.
Platinum NORD Partnership
SHINE Syndrome Foundation has been affiliated with NORD since 2022 and maintains Platinum status!
As a member of NORD, SHINE Syndrome Foundation has access to various resources and benefits, including obtaining support for research, access to NORD’s expertise in growing our community, opportunities to gain funding for conferences or events, and more!
Platinum Guidestar Status
Guidestar is dedicated to raising visibility of nonprofit groups to potential donors. By fostering this partnership, SHINE Syndrome Foundation increases our opportunity to be seen by large donors or matching programs.
SSF achieved Silver Transparency status with Guidestar in 2022, Platinum in 2023 and 2024, and maintains its profile to provide clear and transparent details on our organization and efforts.
COMBINED Brain and Global Genes
SHINE Syndrome Foundation, along with other DLG4 advocate foundations, joined COMBINED Brain in 2022. Our goal is to improve collaboration and gain access to additional resources to speed up the discovery of treatments for SHINE Syndrome.
Partnering with CB is a great step in finding researchers and clinicians willing to study SHINE Syndrome and test treatments. By joining COMBINEDBrain, we also gain access to Global Genes and their network of resources and partners.
Rare Epilepsy Network
REN is a volunteer network that welcomes all rare epilepsy organizations to come together around research efforts where our collective efforts will improve the lives of our individual constituents. REN includes rare epilepsy organizations and broad epilepsy stakeholders committed to this common mission.
SHINE Syndrome Foundation became a member of REN in October 2023 to help find and share more resources for the epilepsy patients in our community.